Is it a bird? Is it a plane? No, it’s…

Spider Boy!!!!

This is BC’s new Second Skin body suit.

We like it much better than his old one.

Partlybecause BC likes wearing it more than his old one,  also because it’s much easier to take on and off. But mostly because we can already see it’s making more of a difference to his mobility.

The old suit had seven zips. This one has three. There are no zips at all around the legs. The bottom half of the suit resemble a pair of lycra bicycle shorts – only, there is a cut out section at his groin to make for easy access when he needs to go to the toilet. This means that, unlike his last suit, the suit does not need to be taken off for toileting. Which is great.

The best thing about this is, according to BC, that  like all good super heroes, he gets to wear his undies on the outside .

As you might be able to see in the pic, there is a long zip at the front and zips along both of the arms. There is some boning in the sides of the suit to keep his body straight, but no way near as much as the previous one.

This means the suit is more comfortable for him to wear, which is another reason why he likes it more.

Of course, it also means that since he was fitted for the first suit, he has developed a lot more core strength and balance so they didn’t feel the need for as much support.

As soon as BC puts the suit on, we can see how much straighter he sits (or stands). And we’ve already noticed that his endurance has improved when he walks in his walker with it. He has made the long walk all the way to the shops or back quite a few times in the last month.

And for those who are wondering what it’s like to wear, he dislikes it being put on or taken off (which I think it mostly about him not wanting to lie still for a few minutes!) but he never complains about it while he’s wearing it. I think it’s quite comfortable for him. And he loves showing it to people.

BC chose his Spiderman design from the big book full of designs that they have. I love it, and it has a particular significance because when we are at home, BC’s main way to get around the house is to walk ‘along’ the walls (holding to walls for support and side stepping). We call this his spider walking. So now he really IS Spiderboy.

BC wears the suit 6-8 hours a day, 5 days a week (weekends are off).  It’s taken off for naps (not that we get many of those any more!) or if he’s not feeling well.

The Second Skin people are lovely. The process of getting the suit involved two steps. The first step was an assessment, where they observed BC at play, taking note of his movement and balance and the areas that need most support and ‘guidance’ (to encourage correct movement).  At this appointment, they also took very thorough measurements, as each suit is uniquely made.

Around 4 weeks later, the suit was ready for collection. At this appointment, BC tried the suit on and we checked for any possible problems. They also gave us a little booklet with suggested activities to maximise benefits of wearing the suit (mostly the involve him standing up to play, at a table rather than playing on the floor).

We got a follow up phone call just the other day to check how the suit is going and we’ll have a follow up appointment in about 6 months to make sure the suit is still fitting and fulfilling its purpose.

The only downside to the suits is the cost. They are expensive. Around $1500. Thanks so much to the Lions Club for funding BC’s suit!!! I don’t think we could have afforded it ourselves. The other downside to the suit is that given children grow so fast, they are only wearable for 12-18 months. There are seams that can be unstitched and extra panels to add it to extend the life, but there’s not much you can do to stop children from growing! We still have BC’s old suit and I’m not sure if there’s anything we can do with it, given that it was uniquely designed for him. It seems like a real waste as it still has a lot of life left in it.

If you want to know more, here’s the link to the Second Skin website and of course I am happy to answer any other questions anyone might have about them.

Buying some time

I mentioned a while back that BC had a less than pleasing visit to the dental clinic at the RCH.

I was disappointed to be told that they wanted to put him under a GA and do some serious work on his teeth.

I know his teeth aren’t great. He really didn’t like them being brushed when he was little, he breastfed a lot through the night, he drank far too much juice, some people just don’t have good teeth…. I could go on.

The simplest fact is though that his teeth just weren’t a priority when he was little. We had bigger fish to fry. It was hard to worry about the risk of a cavity in his upper left incisor when he would only eat pureed food, had trouble drinking from a sipper cup and wasn’t making much of the usual progress towards speech.

So now here we are. Lots of teeth that are ‘compromised’ to say the least. EIGHT in fact.

I know how many because I have now had three dentists inspect the current state of play in his mouth.

As I said above, the first dentist said they wanted him under a GA and they wanted to probably fill and possible extract. They scared me by telling me that if they didn’t do it he would end up with abscesses, excruciating pain and the need for even more dental work.

So I signed the form for the waiting list and cried all the way home. It wasn’t so much about the dental work as the bloody GA. I just don’t like them.

It’s probably got something to do with THIS being our first ever photo of our beautiful son.

I know a GA for some dental work is far from the same thing, but I just don’t want to ever see him helpless and drugged in a hospital bed again, unless it’s absolutely necessary.

So I decided to get a second opinion.

The second opinion was from a free dentist visit as part of BC’s kindergarten program.

And this dentist pretty much said exactly the same things. Good mum will get the GA and all the works. Bad mum won’t.

So, naturally I decided to get a third opinion. And, at the recommendation of BC’s wonderful chiropractor, got the name of a good holistic dentist.

And that’s where we went today. If this dentist agreed with the first two, I was ready to go. I just wanted to have the peace of mind that it was definitely the best plan of action.

The dentist looked at the state of BC’s teeth. He agreed that they weren’t in great condition, but concluded that there was no active decay.

He also said that he could see no need for immediate action. No need for a hospital admission. No need for a GA.

Guess whose advice I am taking?

We bought a tube of this toothpaste from him which he said will ‘re-mineralise’ BC’s teeth.

Neways – Ultrashine Radiance toothpaste

Unfortunately, BC doesn’t much like the taste. I am hoping it will grow on him.

We’re going to go back to see this dentist in 6 months. Sooner if there’s any indication his teeth are worse.

He hasn’t at all suggested there won’t be the need for some serious work in the future, but he said that it’s best to ‘buy some time’.

I agree.

So that’s what we’re doing. I am going to be seriously watching his sugar intake (good-bye juice and nutella) and making sure we get 2 good teeth brushing sessions in a day.

His teeth are now, belatedly, getting as much attention as possible.

And I am totally aware that I am not only buying time for BC to be just that little bit older and more able to cope with dental work and a possible GA, but I am also buying time for me. I am not quite ready for that hospital experience just yet.

Cognitive testing

I mentioned a little while ago that BC was taking part in a study that is looking at cognitive testing of children with CP. The study is not about the cognitive ability of children with CP, but how best to assess them.

A little research of my own drew up this study - “Cognitive profile in young Icelandic children with cerebral palsy”. I only read the abstract. The last sentence of which states: “Thus, cognitive skills can be masked by limitations of movement and motor control in children with CP.“

There’s no real surprise there. Especially now that I know a little more about the nature of the testing that is used.

The Icelandic study used the same testing that is  often used by schools in Australia – the Wechsler Preschool and Primary Scale of Intelligence (WPPSI) – designed to be used for children between the ages of 2 and 7. The wikipedia entry gives the most detailed information about the sub-tests that I could find in a quick google search.

The research that we are involved in is also using this test.

The one criteria required for BC to be part of the test was an ability to point, which he can.

He was asked to complete a series of different tasks (point to something, show the odd one out, matching things etc etc).

There were other sections that required him to speak (eg What animal says ‘quack’? etc). They were obviously more difficult to assess, given his limited speech.

We did the research over 2 sessions. And we still didn’t finish all parts of the test. For one very simple reason. He got tired after about 45 minutes and totally lost interest.

At the end of the first session, he began a task and could not give a single accurate answer. So, if we were ‘seriously’ doing this testing, he would have scored a zero on this task.

However, when we returned a few weeks later (last Saturday), and this task was the FIRST task, he did brilliantly. The examiner added up his score for that section and said that he’d done better than most children his age for that sub-test.

We then began a different test (one which I would have expected him to probably do well in as it involved puzzles, which he loves) and again, he was tired and disinterested and couldn’t get one right.

Both days we tried taking a break (and the promise of hot chips for lunch), but the fun was over for BC and he wanted to go home. So we did.

I already knew this about BC – when he’s interested in something, and focused, he will give it 100% concentration. But as soon as his concentration is used up, it’s game over.

The examiner suggested we COULD come in for a third session to finish off the tasks. Not sure if we will. We might if we have a day free over the next school hols. Just out of curiosity really about what the other parts of the test involve.

We’re going to be sent a report about the sessions that we had, but the results themselves aren’t really that important to me – I was more interested in the ‘how’ of the testing rather than the results.

Although, I will definitely admit that the way things panned out did make me feel quietly confident that we’ve made the right choice to plan for 2 years of kindergarten before going to school. Otherwise, I can envisage me picking him up at recess most days when he’d had enough of being a big kid and instead was just staring out the window…

And my report, which may or may not be useful to others who take this testing for school funding or some other reason, is this – if you have a child with similar concentration issues and the examiner won’t let them do the test over a few different days, then it’s not really worth doing.

I am not sure how the more ‘official’ testing usually is done (I will find out this time next year when we’re preparing for school entry), but I do know that when we do it, as soon as I see that glazed look of disinterest pass over BC’s eyes, I will be suggesting that we might need to finish the testing on another day. And then insisting if I’m told that’s not possible.

But next year is a long way away. A lot will happen between now and then. Who knows how his attention levels will improve. And his speech.

I am glad we’ve taken part in the study. BC enjoyed it (until he got bored) and I found a first hand look at the testing process very interesting. I really hope they come up with some good recommendations and that they are then put in place. It would be even better if that happens before we’re due to do the testing for real next year.

Happy ‘official’ Mother’s Day!

Happy (official) Mother’s Day to all the mums out there!

My day started very early in the morning. Around 5am to be more precise. BC woke screaming from a nightmare. He dreamt he was very cold. As he told me, between inconsolable sobs;  “No jacket”, “No hat”, ” No socks”, “No heater.”  Funnily enough, what he actually had was no doona (it was on the floor).

It took quite a while to calm him down. Who would have known being cold was so terrifying!?

We’ve had a few nightmares in recent times. I am on the look out for a good kids book that might help him understand than bad dreams ARE just dreams. Anyone got one to recommend?

Once we were up (and the central heating was pumped to high throttle),  things got better.

I learnt that a great remedy for forgetting about a bad dream is to declare it’s present opening time. And this is what BC made at kinder and gave me for Mother’s Day:

I love it.

And I now have to confess that I spent most of Mother’s Day working. All for the good family cause of HOPEFULLY buying a house later in the year.

I didn’t mind. I like the work that I do and I already felt as though I’d had a very special Mother’s Day on Friday.

On the way home I stopped to buy myself some new jim-jams and a lovely new bedspread set and I must confess that I couldn’t help but also buy a few really little gifts for my boys. I just feel so blessed to have such gorgeous, funny, loving children. I feel like  such a lucky mumma. AND we had fun opening them and playing together this evening.

I hope all you wonderful mums out there got just what you wanted for Mother’s day! You deserve it.

Mother’s Day

I know Mother’s Day isn’t officially until Sunday, but in our house, Mother’s day was today.

Why?

Because today was the day of the Mother’s Day lunch at BC’s kinder.

He’s been looking forward to it since he first told me last Wednesday.

Every day since then he’s asked me about 20 times – ‘When is Mother’s Day at kinder?’.

He was thrilled about me, and all the other mums, coming to kinder to have lunch with all the kids. He was also very happy about the (secret) present he was making for me.

It’s the first time he’s been excited  about Mother’s Day and I was surprised by how much it touched me.

This morning, from the moment he woke up, he was super, super excited. He asked me several times when I dropped him off what time I would be back. He even said ‘Don’t forget Mother’s Day lunch’.

He needn’t have worried, I’ve been far too looking forward to it too to forget!

I returned at 11.30, as scheduled, with a very sleepy little Bean (who’d been dragged from his morning nap to unwillingly attend).

We firstly did a dance with all the other mums and kids. I was proud that BC knew most of the moves.

We then dined on vegetable soup and damper, prepared by the children (both very delicious!) and a yummy slice made by a parent.

We ended with us being given a gift made by our children, which is still sitting on the top of the bookshelf.

BC insists I should be opening it today because today is Mother’s Day.

And I think he’s right. It feels like Mother’s Day to me.

But still, I am going to wait until Sunday to open it, only because I want to hold on to this warm fuzzy feeling just a little longer.

Since my own mother passed away when I was 17, Mother’s Day has always been a sad kind of day for me. All the advertising and happy family images just rubbed salt in the wound that I didn’t have that special person in my life any more. I’d learned to steer clear of the media in the weeks leading up to Mother’s Day. (I had, and still have, other special days when I remember and celebrate my mum).

For this reason, Mother’s Day has never really mattered much to me since actually becoming a mum myself, but now that it matters to my child, it suddenly seems like a really, really special day to me.

I will look forward to Mother’s Day in future years when both BC and later on Little Bean want to celebrate this special day with me.

Happy Mother’s Day (for the ‘official’ Mother’s Day on Sunday) to all the mothers out there!! I hope you get spoilt rotten! You deserve it xo

Dear Blogosphere wish fairies…

Dear wish fairies,

Thank you very much for my 10 hour uninterrupted sleep last night, as requested in my blog post yesterday. I really appreciate your immediate action on this issue.

Seeing as you seem so willing and able to help me out, I just have a few other requests.

I have this gorgeous little4 year old boy who can’t walk independently yet. It would be great if you could just help him out a little and give him the strength, balance and coordination to take off on his own.

Also, he finds talking quite tricky. If you could help him out with his oral-motor control and give him the power of easy speech, then that would be great. Taking care of his saliva control would also be appreciated.

In fact, I know quite a few beautiful children who could do with similar help. If you’re not too busy, a cure for cerebral palsy would be fantastic.

Oh, and finally, and sorry to seem a little greedy, but I have about 5 kgs of weight, mostly around my middle that I just can’t seem to budge. If I could wake up tomorrow and find that gone, then that would be great too.

Yours very gratefully,

Dianne

A full night’s sleep. Please!

Little Bean is getting his two year old molars.

And, on Sunday he had an unfortunate meeting with some soy sauce marinated chicken which has caused another onset of his eczema.

He’s not sleeping well at all. Which means, neither am I.

One of the definite disadvantages of co-sleeping is that if your child isn’t asleep then the odds are you won’t be either.

I still wouldn’t have it any other way. The advantages outweigh the disadvantages (most of the time).

I LOVE watching my boys sleep. I love having them cuddle up to me when it’s cold. I love hearing them breathing and grunting (and best of all, sometimes laughing – oh how I wish I could see what they are dreaming about!).

However, right now I would do just about anything for a full night’s sleep. Instead of giving up on sleeping all together, like last night, and sitting up with little Bean for hours watching Teletubbies and In The Night Garden. Not my idea of a big night.

Hurry up teeth! Do your thing!

And eczema – GO AWAY!!! We all need to get back to sleep.

Well meaning but….

Did anyone else see this in the newspaper today:

“Students asked to dress as a disabled person for fundraiser”

Read this quote from the newsletter that was sent home with the children: “There will be prizes for the best students dressed as a person with a disability. Get your thinking hats on and see what disability you can represent!”

The fundraising day is well meaning (raising funds for cleft palate operations in Bangladesh) and I am sure no offence was intended, but it makes me a bit sad that not just one person but a student representative council (which I imagine probably involves teachers, students and parents) decided it was a good idea.

According to the article, they later sent clarification to the parents to say the idea “had been for students to come in with a bandaged arm or leg” which somehow makes it worse rather than better.

Is that what constitutes a disability?

Well, it’s definitely not the crime of the decade, and I can see all the good intentions behind it, but I still wish a little more thought had gone into it.

I do hope they raise the money for their good cause though.